Dysautonomia, a new thing?

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hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Dysautonomia, a new thing?

Postby hawkowl » Thu Nov 30, 2017 11:53 pm

The Botox is supposed to decrease the recurrent bladder spasms that result in urinaray urgency (and incontinence). The risk is that I will end up with a temporary "neurogenic bladder" and urinary retention. That could be bad because I have a fibrotic prostate from radiation and also don't really have the manual dexterity to self catheterize, so I could potentially end up with a temporary indwelling catheter or suprapubic tube if things don't work out as planned. The other option might be a bladder pacemaker.

In terms of other medications...I am on magnesium caplets and miralax for the constipation (I tried Linzess but developed severe abdominal cramps), flomax for urinary issues (tried Detrol but that made my constipation and gastroparesis worse), and nothing other than marinol for the queasiness (reglan gave me CNS side effects). And the gabapentin and lorazepam. I can't take any opioids because of the decreased gi motility. It seems like whatever works for one issue, makes something else worse.

I did have a normal endocribolgy workup (thyroid, cortisol, acth Stimulation test, hemoglobin A1C), so the presumptive cause is autonomic neuropathy due to oxaliplatin...and considering my severe peripheral neuropathy, this makes the most sense.

I have thought about setting up an appointment at Mayo or Hopkins for treatment advice, but I am not sure there really are any good options, and frankly I am not sure I have the energy to see yet another physician.

Have you come across any other people with chemo induced dysautonomia? It sure would be great to hear what others have tried!! I'm so glad you started this thread :-)
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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KellyBelle
Posts: 811
Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Fri Dec 01, 2017 11:28 am

I’ve asked my PCP for a referral to Mayo Clinic, but in all honesty I don’t know how to physically get there.

No steroids or other specific medications to increase your blood pressure? I was on some steroid-on-steroid medication, but it made me so irritable I stopped. I’ve read about beta blockers and long-term antibiotic therapy, and I’m going to discuss these options with my neurologist this month.

No, I haven’t heard from anybody about chemo-induced Dysautonomia. You can see the beginning of this thread where a couple of folks doubted my diagnosis... we’re so special, nobody has even heard of it. I’m so glad YOU posted.

This is worse than chemo. :cry:
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Dysautonomia, a new thing?

Postby hawkowl » Fri Dec 01, 2017 8:19 pm

I am actually on a beta blocker (for years, for migraines). When I started to get orthostatic dizziness I tried tapering off, but then the positional tachycardia was crazy. Now I'm on a reduced dose. If I truly thought there was some magical answer that Mayo it Hopkins could provide, I would consider it. I have not been on steroids for this, but they tend to make me hyper and irritable as well.
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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KellyBelle
Posts: 811
Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Sat Dec 02, 2017 6:08 pm

hawkowl wrote:I am actually on a beta blocker (for years, for migraines). When I started to get orthostatic dizziness I tried tapering off, but then the positional tachycardia was crazy. Now I'm on a reduced dose. If I truly thought there was some magical answer that Mayo it Hopkins could provide, I would consider it. I have not been on steroids for this, but they tend to make me hyper and irritable as well.


I have no tachycardia. My heart rate is so low. Have you been told to wear compression garments? That’s not pretty with my sweating issues.

I can’t leave you alone because I’m trying to put together a list of ??? for my doctor. I have the feeling I’m his first Dysautonomia patient. But there’s a specialist in Dallas... just need a referral from my PCP. His name is Dr. Ben Levine.

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Dysautonomia, a new thing?

Postby MissMolly » Sat Dec 02, 2017 7:06 pm

Kelly:
My comments on adrenal insufficiency were certainly not to disclaim your diagnosis of dysautonomia. Disruption of the autonomic nervous system, as you are well aware, is seriously life-disrupting - affecting almost every aspect of how the body works and functions. My comments were to provide additional awareness and information for you to compare to your own presentation of symptoms.

It is certainly possible for you to have both dysautonomia and low cortisol and/or low aldosterone. One does not exclude the other. Especially given that you are being advised to be generous with adding salt as a means of lifting your low blood pressure, it would be worth discussing with your endocrinologist if your blood work has included lab analysis of cortisol and aldosterone. Adrenal insufficiency involves low cortisol and low aldosterone. Aldosterone is a hormone that closely regulates sodium and potassium levels. Individuals with adrenal insufficiency typically crave salty foods as response to low aldosterone. Low blood pressure associated with adrenal insufficiency is seriously low. Much as you are describing.

In my years of practice as a physical therapist, I saw cases of autonomic nervous system dysfunction in children undergoing chemotherapy for leukemia. High dose “chemo-bombing” with platinum based chemotherapy agents had the secondary effect of leaving many of these children with gastroparesis, ileus of the large intestine (pseudo-obstruction) and postural hypotension that was seriously debilitating. You do have shared company in what you are experiencing with children who have undergone high dose therapy for leukemia. Researching how these pediatric patients have been cared for may shed additional light on options to aide your own cause.

You have my genuine empathy for what you are going through, struggling with the interruption of the body’s innate and automatic regulatory functions. I have broad endocrine failure, lacking key hormones that give instruction to organs and body systems. It is a lonely place, medically, as physicians have scant tools or resources to make things “better.” I do the best that I can do.

I hope that the specialist physician referral in Dallas is a positive exchange and that he/she has ideas to support your body’s autonomic nervous system and -by extension- your quality of life.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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KellyBelle
Posts: 811
Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Sat Dec 02, 2017 8:48 pm

Thank you! I didn’t mean to imply you were wrong; I’m just beginning my journey and it looks like it’s going to be a long one. I was just hoping to find someone suffering from the same thing.

I entered your statement into my journal yesterday to take with me to my next appointment.
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

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CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

Re: Dysautonomia, a new thing?

Postby CRguy » Sun Dec 03, 2017 2:01 am

Hey KellyBelle !!!!!!
You know the drill my friend :
Sorry you have to be HERE for the second time now :(
BUTT glad you came back to share a part of the Journey.

Hoping the "new" generation of members can and WILL help you through these new challenges

You and I are 'ole skule and since I refuse to do FBook anymore .....
sending MEGA POSI +++++ VIBES your way to get some resolution and relief

please keep us in the loop with anything you find out from your experts

Harmony sista'
On The Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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KellyBelle
Posts: 811
Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Sun Dec 03, 2017 11:35 am

CRguy!! I’ve been gone so long :oops:

I was sad to read of Brownbagger’s passing.

To be honest, I couldn’t emotionally handle the dying situation so I just left. I feel selfish for that, but I have to take care of my own mental health. Many times I sat here and cried, “why not me?” when a young mother died.

Hugs!

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

User avatar
CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

Re: Dysautonomia, a new thing?

Postby CRguy » Sun Dec 03, 2017 1:28 pm

I hear you my friend
loud and clear :(

Harmony
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Dysautonomia, a new thing?

Postby MissMolly » Sun Dec 03, 2017 5:04 pm

Kelley:
Do you know the etiology of your hypothyroidism? Auto-immune based Hashimoto’s thyroidits? Primary/central hypothyroidism (pituitary based)? Or other? Did you have hypothyroidism prior to chemotherapy? Or did the hypothyroidism manifest after chemotherapy?

Your low thyroid function might be part of the equation of issues that you can define as chemotherapy induced.

Yes . . . I agree with your surmising that your new journey post chemotherapy will be lengthy with its own twists and turns and revelations and new understandings. Keep faith and hope in the body’s amazing ability to adjust, adapt, and to heal.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Dysautonomia, a new thing?

Postby hawkowl » Mon Dec 04, 2017 6:36 am

Regarding compression garments: I have not tried them. I live in a warm and humid climate and have peripheral neuropathy as well. I hate wearing tight fitting clothing and can't stand the feeling of even regular socks on my feet. Not sure I could do the garments...
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

User avatar
KellyBelle
Posts: 811
Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Mon Dec 04, 2017 6:52 pm

MissMolly wrote:Kelley:
Do you know the etiology of your hypothyroidism? Auto-immune based Hashimoto’s thyroidits? Primary/central hypothyroidism (pituitary based)? Or other? Did you have hypothyroidism prior to chemotherapy? Or did the hypothyroidism manifest after chemotherapy?

Your low thyroid function might be part of the equation of issues that you can define as chemotherapy induced.

Yes . . . I agree with your surmising that your new journey post chemotherapy will be lengthy with its own twists and turns and revelations and new understandings. Keep faith and hope in the body’s amazing ability to adjust, adapt, and to heal.
Karen


Thank you! I don’t know the etiology of my hypothyroidism. I know I have nodules that I’ve had biopsied and drained. That hurt! I know one growth was there prior to chemo.

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses


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